Tell the Professor what you think!

I am sitting at my desk, minding my own business and this email comes in …

I spent yesterday reading your blog. Our unborn daughter, due in February, has hydrocephalus, agenesis of the corpus callosum, microcephaly, a dilated kidney, and several other (relatively) minor issues. I needed to find someone who could be honest about what life with a severely disabled child is like. I found your blog from Claire’s (I think).

I’m 35, an assistant professor, and I used to help run our family business. I’m married with a one-year-old (seemingly normal) daughter. I have no right to ask you anything, but I’m wondering what you wish you would have known when Pearlsky was born. Is there advice beyond what I’ve read from your blog that you think might be useful?

I know you’re busy, so I understand if you can’t respond. Thank you for pegging exactly what bothers me about “Welcome to Holland”. Thank you for sharing your story–I don’t think you’ll understand what it meant to me to read it when I did.

Thanks again,

Yes, I responded but I think you should. Feel free to write in the comments, but remember the following …

The issues with their new daughter can run the gamut, there is no way to know how severely she will be disabled, it can be from extremely mild, to, well, extremely not mild. Do not make assumptions, no one will know for a while. I assume they have the right medical support at this point, and are also bracing for the worst, which is one valid mechanism.

Comments

Did you say ‘unborn’ daughter? I can’t comment on this one. I’ll be shredded from here to Kansas and back again. And I need that like a hole in the head.

I will say to your new follower that I am certainly very sorry for what has happened and wish you nothing but the best possible outcomes, but I am not the person to be giving any sort of advice here.

Welcome to our world though…I am the resident Weirdo. The best analogy for me would be if a fat(er) Michael Chiklis played the Anthony Michael Hall character in a remake of The Breakfast Club except not in High School and with less humor, more anger, gritty violence and a propensity for full-frontal nudity and nervous breakdowns.

I always have this overwhelming urge to comfort people, say something encouraging or give advice, even when I should just shut up. People are different, and what’s encouraging for one person can be annoying for another. (See the infamous Holland piece). I can only tell you how I’ve dealt with the insanity that we’ve been living the past two years:
1. Allowing myself to grieve, even if it’s uncomfortable to watch for the people around me. Crying doesn’t make you a weaker person.
2. Finding a support community, people who’ve been there, people who get it. Either in the real world or online. Remembering that I’m not alone, even it feels like it sometimes.
3. Taking it one day at a time. Sometimes 1 hour at a time. All I have is the here and now.
4. Monitoring and controlling my thoughts and emotions, realizing that all emotions start in the brain. Telling myself I can do it, even if it seems utterly impossible.
5. Keeping a sense of humor, seeing the irony, the absurd the ridiculous in a situation.
6. Telling people what I need. Sometimes well-intentioned people say the stupidest things or stay away because they don’t want to offend you.
7. Finding an outlet. Blogging, writing poetry, working out, running, walking, playing video games, praying, music, or whatever that lets out steam and takes your mind off of the craziness.
8. Stop researching crap online obsessively.

I’d ditto everything that Erika says with a special emphasis on finding “your people” — online or otherwise — and letting them help you. The only regret I have from my early years of dealing with my daughter’s disability (fifteen years ago) is not getting more help very early on when it was offered and thinking that I could do it all, that I would do it all, that it was my responsibility to do it all and that if I did it all, I would control it all. I also recommend the mantra “Breathing in I calm myself, breathing out I smile” which I do even when I’m crying. It definitely helps.

Much love and support and blessings to you and your beautiful little unborn child.

I have a daughter with Agenesis of the Corpus Callosum (ACC) and no other diagnosis (yet). With this diagnosis finding “your people” is no easy task as symptoms can vary greatly from very ok to not-so-ok. This uncertainty is one of the toughest things about ACC. It is also one of the best things as it provides realistic hope in some cases.

There are some online support groups and organizations that can be quite helpfull and a few (relatively) active bloggers.

If you’d like to get in touch or need any info you can get my email address from SingleDad. I had to submit it with this comment so I guess he has it. If not, post a comment and I’ll put it out here with a hope that not many spammers get it.

Grooda — I hope it wasn’t offensive to you, but when I wrote “your people,” I meant those with whom you relate best and not those with whom you might share a diagnosis. I have found that I need people around me with a certain sense of humor (black) and that those who “tell it like it is” without a lot of sugar-coating help me to cope. I think we are often pressured, as people with children with special needs, to cope in certain ways, to be “saints” and “accepting” and all that — many draw strength from using those words, but they aren’t necessarily my people. My advice is to find one’s people, those who truly help you — both emotionally and intellectually — whomever they might be.

By the way, I’m sorry for poor spelling and bad syntax (that I noticed too late). I am not completely illiterate and don’t want to give you a wrong impression. It’s just that English is not my first language.

All of these parents chose to give life to their children – as it appears you have also. They also blog on other aspects of their lives. I have been reading all of them for over a year. While they are not in the dark humor crowd, they do not sugar-coat the difficulties. They are great celebrators of those things their children achieve or bring to their lives.

I think you are so smart to interact with parents of children who are in their teens but the children in the blogs I listed are in the 3-4 year age range – different perspective. Each of those parent bloggers are also well-connected with other parents – see their blogrolls.

I read a lot of blogs of parents with children with diagnoses. Consider visiting my blog by clicking on my name. Emphasizing Elizabeth’s comment on trying to control – my end-of-the-year post addresses that also.

Now I’ll give you my advice / comments. From one professor to another! Feel free to leave class early and just stop reading at any time …

Stop freaking out. Your spouse (?) as well. I am making an assumption here, but I know it must be driving you crazy. Understand and believe a couple of things … 1) medicine is an ART not a science 2) whatever the doctors are telling you, they are guessing, other than a hard diagnosis, they do NOT know what will be.

Your new daughter will be who she is. You will love her as much as you love her older sister.

She will reach milestones. They will be her milestones, but alas, she will.

As you fear, she may or may not make it home from the hospital. But she also may or may not graduate high school with her friends. No one knows. You will deal either way. Period.

You or others will say, “Of course we deal, what choice do we have?” Remember my mother’s response to that … “You have two choices, you can do it right, or you can fuck it up.”

There are many things you cannot change, you can only manage. And you can only manage if you have your head about you.

As you may have gathered from my blog, I am a bit religious, yet a heathen. Go figure. You may get solace in your religion, and on some levels that is great, but watch out for the crazies. God and prayers are wonderful at times, but so are doctors and mainstream meds.

Stop asking “why?” It gets you nowhere. Oh, and it’s ok to cry.

You and your spouse will survive. And, if you stay a team, you will more than thrive. And don’t ever let your older daughter forget how much you love her. Or your spouse, for that matter.

Assuming this is your holiday this weekend, GET OFF THE INTERNET, stop worrying, enjoy your spouse and daughter, celebrate whatever you celebrate. Life will go on. There will always be another semester.

I’m not an expert, my daughter is “normal”. But I can tell you from the other’s perspective: tell the people around you what you need/want (remember, those can contradict eachother). Most people won’t know what to say/do, resulting in either doing/saying the wrong thing, doing/saying nothing at all, or occasionally the right thing.

Here in the Netherlands when people ask what they want their unborn child to be (boy or girl) people often answer: “I don’t care, as long as it’s healthy”. Never thinking it might actually turn out not to be. Things which are taken for granted suddenly no longer apply for you and your family. I guess that is one of the major things you’re gonna have to come to terms with.

Hope my outsider perspective is helpfull.

Oh also, talk about your feelings with your significant other, share and have him/her share. Trying to “spare” eachother your grief can drive you apart. I’ve seen it often enough.

As someone born in a position of unknown disability (Spina Bifida) I know some of what my parents went through when I arrived. I have minor challenges, but nothing unmanageable. I’ve also had my share of parental terror with my own children’s medical ‘troubles’.

Your daughter will be who she is. Whatever level she operates at, whatever her capabilities and limits will be, she’ll be her own person. The two biggest things I’ve run into are blame (which isn’t productive and WILL suck the life out of you if you let it) and focusing so much on the problems that the person gets forgotten. Marriage can be a source of astounding strength. Your oldest daughter will need you too, and children can amaze you with how much they love each other.

Medicine is absolutely an Art. Occasionally a black, black art of best guesses and near misses. For every amazing physician that graduates at the top of their class hundreds don’t.

Be you daughter’s voice, be her advocate, nobody else will be as effective. ‘Normal’ is an arbitrary concept that’s just the average of all the exceptions. ‘Normal’ and Happy aren’t the same thing, don’t confuse them.